Patient experiences of living with cancer before interaction with palliative care services in Zimbabwe: A qualitative secondary data analysis

Abstract Objective Cancer patients in Zimbabwe typically access health services with advanced disease, limiting treatment choices and lessening the likelihood of positive treatment outcomes. We outline experiences of patients with advanced cancer prior to interaction with palliative care services to identify targets for future intervention development to enhance care delivery in Zimbabwe. Methods Participants were purposively sampled adult patients with advanced cancer. We adopted a thematic approach to guide a qualitative secondary data analysis exploring factors influencing support sought by participants, external factors influencing decision making across the disease trajectory and the process for seeking and accessing palliative care. Results Participants reported fragmented and uncoordinated care, from initial symptom experience and throughout disease progression. A recurring notion of disjuncture was present through participants' experiences of gaps, breaks and discontinuity across the disease trajectory. Each step had a beginning and end without clear routes for transition with movement between steps as a result of happenstance or informal encounters. Conclusion Targets for intervention development at the patient and family level exist that may reduce the disjuncture currently experienced between need and care provision. A holistic response that incorporates engagement with policy actors is critical to addressing prominent financial constraints for patients.

priority (Fatunmbi et al., 2018). There is a large disparity in access to cancer treatment and outcomes worldwide and less developed countries account for only 6% of the total resources that are spent on cancer care. Such limited resources lead to limits in the availability of treatment and contribute to the high mortality rates in less developed countries (Swanson et al., 2018). In sub-Saharan Africa, 70%-80% of the cancer cases are at a late stage and incurable at the time they are detected and diagnosed due to lack of access to cancer screening and diagnostic technologies, poverty and limited health literacy (Brien et al., 2013;Okunade et al., 2019;Shah et al., 2019). It is estimated that cancer incidence in sub-Saharan Africa (SSA) will exceed 1 million in 2030 (Brien et al., 2013). Cancer is projected to be the lead cause of SSA experiencing the highest proportional increase in serious health-related suffering globally by 2060(Sleeman et al., 2019. In Zimbabwe, cancer is a major cause of morbidity and mortality, with the most recent data available through the World Health Organization (WHO) indicating there were 16,083 new cancer cases and 10,676 deaths in 2020 (International Agency for Research on Cancer, 2021). The most common cancers are cervical and breast, accounting for a third of all cancer cases and predominantly affecting women, with prostate, Kaposi sarcoma and Non-Hodgkin's lymphoma cancers also common. Despite a population-based registry being present in Zimbabwe (Tangka et al., 2019), existing cancer data are thought to underestimate the extent of the cancer burden due to a lack of appropriate diagnosis, poor access to care and limitations in infrastructure (Olaleye & Ekrikpo, 2017). Furthermore, there is currently a lack of availability of data on the number of people living with cancer presenting at an advanced stage of disease in Zimbabwe.
Regional estimates place these at 70%-80% of all patients with cancer prior to the coronavirus disease 2019 (COVID-19) (Brien et al., 2013;Shah et al., 2019). However, it is anticipated that health system closures (e.g., suspending cancer screening programmes) and reductions in the availability of and access to care may lead to an initial reduction in cancer incidence which will be followed by an increase in advanced-stage diagnoses and cancer mortality (Sung et al., 2021).
Broadly, across the research literature, patients with cancer and their caregivers report a wide range of context-bound unmet needs (Wang et al., 2018). Patients with cancer in SSA have a high burden of physical symptoms, including lack of energy, shortness of breath, cough, pain, difficulties in sleeping and dry mouth. Patients also report wanting better communication around their needs and care options and experience psychological and spiritual distress (Adejoh et al., 2021;Beynon et al., 2014;Harding et al., 2011;Selman et al., 2011) alongside emotional grief owing to cancer stigma and perceptions of patients with cancer as being worthless (Edwards & Greeff, 2018). Living with cancer can have a pervasive impact on a patient's life including social relationships and spiritual and religious beliefs and practices (Kelly et al., 2019). The impact of patients extends to family caregivers too, who face compounded poverty and psychological distress, where the role can be viewed as a burden and challenging (Adejoh et al., 2021). Patients with cancer and their families are also faced with common and high out-of-pocket expenses across all stages of the disease trajectory, leading to decreases in total household income, reduced expenditure for social and recreational expenditure, the sale of family assets and the need to borrow money (Owenga & Nyambedha, 2018). Public health spending per capita in Zimbabwe is one of the lowest among countries in the Southern Africa sub-region, with a lack of financial and social support systems by the central government (World Bank, 2017).
There is currently a limited evidence base underpinning cancer care in SSA, comprising mostly small-scale quantitative studies to inform generic needs and outcomes of patients with cancer. Furthermore, there is a lack of qualitative evidence that outlines the specific needs and experiences of patients with cancer in SSA. The latter is a critical gap in the evidence base that is necessary to guide the development of patient-centred approaches to health service delivery (Mirzaei et al., 2013) which we focus on with this study. Furthermore, the assessment of experiences, preferences, needs and outcomes of patients with advanced diseases including cancer has been highlighted as a regional priority in SSA (Harding et al., 2013;Powell et al., 2014).
For those living with advanced disease, the WHO advocates for access to palliative care that provides '… an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with a life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual' (World Health Organization, 2021).
This research addresses gaps in the evidence base underpinning cancer care in SSA through undertaking a secondary qualitative data analysis to explore the experience of patients with cancer from the point of initially experiencing symptoms, through to access to palliative care services. By characterising the pathway of care and factors influencing access to support, we aim to identify targets for future intervention development to enhance the delivery of cancer care in Zimbabwe.

| Research question
What is the experience of people living with cancer before interaction with palliative care services in Zimbabwe?

| Study design and setting
Secondary data analysis (SDA) was carried out on a subset of data from a cross-sectional, multi-country qualitative study in sub-Saharan Africa. SDA is a valuable and flexible method that can be used to explore new or supplementary research questions (Johnston, 2014).
After primary analysis of the patient interviews conducted in Zimbabwe, varied and rich data on patient illness trajectories remained, and thus, we sought to further explore this data through SDA. We assessed the patient transcripts and the research question explored in this study against a rubric (Sherif, 2018) to assure the fit and relevance of pre-existing qualitative data to this secondary analysis. Members of the research team were involved in the parent study, with the lead author responsible for undertaking interviews in Zimbabwe and the last author led the parent study and primary analysis with other members of the team. The parent study used semistructured face-to-face interviews with patients, caregivers, health professionals and policymakers to define optimal mechanisms through which patient-level data can be integrated into palliative cancer care delivery and improvement. A total of 195 in-depth interviews were conducted across the four stakeholder groups (advanced cancer patients (n = 62), informal caregivers (n = 48), health care professionals (n = 59) and policy-makers (n = 26)). For patient participants, interviews sought to explore their experience of living with cancer, current interaction with and access to palliative care services, and the potential role of technologies to facilitate interaction with health services and data collection. In terms of the current delivery of palliative care for participants in this study, there is increasing evidence that early provision of palliative care, at least 3-4 months before death, can improve patient quality of life and reduce burdensome treatments and financial costs (Jordan et al., 2020). Similar to other low-resource settings, however, in the context of Zimbabwe, palliative care predominantly supports people living with advanced diseases at the end of life, is largely supported by non-governmental organisations and is not currently integrated into routine care (Khumalo & Maasdorp, 2016

| Data collection
In the parent study clinical staff at recruiting facilities reviewed clinical records to identify potential participants, introduced the study and referred them to the research assistants if they were willing to participate. Patients who were considered ethically inappropriate by members of the clinical team, for example, where death was imminent, were not approached. Participating patients were only asked to participate in one face-to-face interview and provided with between 24 h and 1 week to decide whether they would like to participate, at home or at a clinic. Trained researchers with an in-depth knowledge of methodologies conducted the original interviews in English, alongside a proportion incorporating Shona (n = 16) as part of data collection in Zimbabwe, although language switching was common during interviews. The language of the interviews was chosen by the participant.

| Data analysis
We adopted a thematic approach (Guest et al., 2012) to guide a qualitative secondary data as we sought to generate new theory underpinning the experience of patients living with cancer before interaction with palliative care services. Two researchers supported by a third author analyse transcripts one by one, with data coding comprising substantive and theoretical coding. The researchers read transcripts multiple times, paying attention to shared processes to determine meaningful components in the narratives that provided an understanding of how the participants experienced these events and produced an initial list of codes (Moran & Russo-Netzer, 2015). When rereading the transcripts, we focused on the following questions: What are the factors that influence the type of support or treatment sought? How is the patient's decision-making at each stage of the process affected by external aspects such as service costs? How do these factors affect the process of moving into palliative care services?
Upon obtaining a sense of immersion in the material, the authors met to discuss initial findings. Strategies adopted included open and focused coding and memos, searching for negative cases and constant comparison, to develop categories and identify trajectory patterns from initial symptom experience to palliative care access. Theoretical coding of disjuncture emerged from constant comparison which was further explored through review of the research literature, including disjuncture theory (DePoy & Gilson, 2015;Jarvis, 2012). Disjuncture reflects a disconnected relationship between at least two entities, the patient and the healthcare they sought, often with a conflict between perceived need and attainment of support. Following analysis, we developed a schematic depicting principal themes and patterns in the analysis, partly informed by existing pathways of access to treatment (Scott et al., 2012). Members of the research team developed an initial thematic network which was then adapted through iterations of feedback to the wider research team. The final thematic network is presented in Figure 1. Data are presented in accordance with consolidated criteria for reporting qualitative research (COREQ) (Tong et al., 2007).

Ethical approval was provided from local institutional review boards in
Zimbabwe and collaborating organisations.

| Findings
The clinical and sociodemographic characteristics of the participants are shown in Table 1. The average age of the participants was 51 years, ranging from 19 to 78 years, with multiple cancer types (see Table 1). Our coding framework included five stages of a patient's cancer trajectory from the initial appearance of symptoms to accessing hospice care, as illustrated in Figure 1. Themes comprised both exclusive sub-themes leading to delays in accessing support, alongside a recurring concept of disjuncture (see Table 2). Supporting quotes are provided alongside the findings (see Table 3). Disjuncture in this context refers to the gaps, breaks or discontinuities in the patient experience of the cancer trajectory and the contingent factors that operate to account for or explain them (Bjursell, 2020). Within our analysis, these arose at the level of the patient, their family and professional health care and service. We outline the thematic network which includes the stages of the cancer trajectory, sub-themes and the presence of disjuncture in Figure 1 and describe these in detail, below.

Awareness and perceived seriousness of symptoms
Knowledge and perceptions about the seriousness of symptoms influenced patients' initial help-seeking behaviours and time to cancer care. Most experienced signs of feeling unwell and symptoms including pain, bleeding, severe cough, shortness of breath and appearance of growths. Patients were not aware of the cause of symptoms and did not perceive them to be serious, often not initially seeking help. Some participants obtained medication for pain management from healthcare providers but most experienced a prolonged period of self-management of early symptoms without input or support from healthcare providers (quote 1).

Cultural beliefs
Families and participant communities shaped interaction with health services when experiencing initial symptoms. Some families and communities interpreted symptoms as emanating from traditional or cultural causes and hence needed to be addressed with traditional medicine.
Some participants described their families in rural areas suggesting and facilitating access to practitioners to manage their condition (quote 2).

Financial constraints
Participant decision-making regarding engaging with care providers during early and subsequent stages is shaped largely by associated service costs, including transport, consultation fees, laboratory specimen fees and treatment. This was a major determining factor on whether a patient would move to the next level of care and central to the decision to approach a provider to determine the cause or F I G U R E 1 Phases of care accessed by patients and the barriers causing disjuncture between what is sought after and attainable treatment for the 'symptom'. Almost all patients were aware that diagnosis and treatment required financial resources which involved drawing on support from family, relatives or friends before engaging health care providers (quote 3).

Moratorium through initial medicines management
When participants sought support with worsening or persistent symptoms there was no clear pathway alongside uncertainty in where to access support. Those who had previously visited healthcare providers revisited facilities. Access to and engagement with healthcare providers did not progress efforts to determine a diagnosis through testing, with durations of years reported between initial symptoms and receiving treatment (quote 4). Participants also reported periods of prolonged medication use despite an absence of improvement (quote 5).

Financial constraints to diagnostic testing
Persisting through interaction with health providers, the length of time between seeing the doctor and undergoing diagnostic tests, or an affordable selection, was affected by the ability of participants to pay. Family and friends were approached for support to gather the funds necessary to pay for diagnostic tests (quote 6). Where funds could not be gathered by participants, long delays could be incurred (quote 7).

15
'There is another one-; I don't know where his surgery is located. He is the one who said go and see that one. We then went to … before we got to him, we saw this other one who has got this surgery … When we got there, he said you have come to the wrong person, l am not the one. "let me direct you to the person with this name, the one you are looking for." Then he told him that "there are people who were referred to you by … by this doctor … he is the one who referred them to you"'. And then I went, that was in <<my hometown>>… they started doing the-; it's called staging, they wanted to see how far it had gone, and they … I went for some scans, CT scans, X-rays, many-; many tests. They told me that it has gone up to the stomach. So, they can't operate. At first, they told me that if its still on the early stage, they will put me a colostomy bag … they said they can't do that because it has spread up to the whole of the stomach, the intestines, there are a lot of cancer cells inside my stomach, so I will have to do chemotherapy. to access support with its management.

Availability of specialists and diagnostic testing
Most participants attended central care hospitals to receive a diagnosis, prompted by inadequate resolution of symptoms with an existing provider or through referral. Most participants were able to access a specialist via this route, although a few participants reported labour strike action by doctors hindered access (quote 10). Limited diagnostic resources, including nonfunctioning equipment, at the central care facilities resulted in patients being referred to private facilities for further investigations which included laboratory tests and medical X-rays, leading to participant travel between facilities to undergo tests and determine the appropriate treatment approach (quote 11).

Patient responsibility for coordination of care
Navigating which professionals and facilities should be accessed across the connecting and moving network was felt to be the responsibility of the participants, without knowledge of available resources to guide this process. At higher-level facilities, such as tertiary hospitals, participants reported a lack of communication and poor coordination (e.g., interpreting diagnostic procedure results [quote 12]). Others reported having to undergo repeated tests when seeing a new doctor, leading to further delays in accessing biopsy services and pathology results. A few participants also underwent investigations in other countries such as South Africa, delaying receipt of medical reports to inform treatment plans (quote 13). One participant described disagreement between health providers as causing a delay in commencing treatment (quote 14). No referral system was described by participants, who were often moving between health care facilities driven by individual-level decisions by health providers (quote 15).

| Treatment
Limited options through delayed diagnosis Timely recognition of cancer signs and symptoms is critical for early diagnosis and treatment initiation (Pati et al., 2013). The low awareness of presenting signs and symptoms has been highlighted as a major contributing factor to delay in accessing treatment, such as for women with breast cancer in SSA (Akuoko et al., 2017). Psychosocial factors which include beliefs held about medical and health practices have been shown as contributing factors to delayed cancer diagnosis and care . Approaches with emerging evidence of effectiveness at improving knowledge of cancer symptoms in the general population of LMICs include lecture and workshop series' (Mena et al., 2014) and computer-based educational interventions (McCree-Hale et al., 2012). There is limited evidence for any long-term outcomes relating to disease downstaging and improved referral rates for media campaigns that target, for example, newspapers and national radio broadcasts (Qu et al., 2020). There is currently no literature reporting exploration of these approaches in Zimbabwe which may be a focus on future research. Furthermore, in our study, family members were a crucial component influencing initial interaction and access to support, whether through Western medicine, traditional medicine, or both simultaneously. The widespread availability and comparatively low cost of treatments from traditional practitioners can make these viable options for those seeking healthcare in Zimbabwe, as reflected broadly across research in the SSA region (James et al., 2018). At the health service level, some participants reported delays in accessing further support from primary health facilities due to a lack of symptoms being recognised as indicative of cancer. It was common for patients to report inaccurate interpretation of symptoms, including diagnoses such as tuberculosis or sexually transmitted diseases, aligned to evidence from Malawi and South Africa in which low knowledge of cancer signs and symptoms led to instances of misdiagnosis . The experience of participants in this study conveys factors at both the patient-and service-level that may be targeted for future intervention development to improve outcomes for people with cancer. For example, one intervention approach that could address fragmented care is navigation services, where a person (navigator) engages with a patient to determine barriers to care and provides information to improve access to components of the health system, not just primary care (Peart et al., 2018).
In the context of LMICs, there is evidence that the approach can improve screening rates, post-operative complications and patient retention (Dalton et al., 2019). Broadly, there was a critical and significant lack of information for participants. Limited research from South Africa and Uganda has highlighted unmet information needs of patients with progressive illnesses, which include information on the causes and progression of diseases, symptoms, and financial/social support (Selman et al., 2009). It is crucial that to empower patients, approaches to improving the provision of information, independent of whether the mode is via navigation services or other modes of delivery, should be prioritised in future research. This extends to health professionals where, for example, limited or lack of cervical cancer knowledge among nurses especially in primary health care can act as a barrier to accessing prevention, screening and palliative care for women with cervical cancer in Zimbabwe (Tapera & Nyakabau, 2020  . For the majority of people with cancer presenting with advanced disease, existing challenges undermine efforts to increase the availability of palliative care. This includes a lack of access to essential medicines for symptom management due to, for example, factors relating to policy, education and training (Tererai, 2020), alongside an absence of chemotherapeutic drugs and radiotherapy (Das, 2021). These factors were highlighted in a recent project seeking to integrate palliative care into the Zimbabwe healthcare system (Sisimayi et al., 2021). Health institutions may have services with the potential to support palliative care delivery, but they lack trained palliative care personnel and experience persistent stockouts of essential palliative care medicines that can hamper optimal service provision. Any response to support the needs of people with advanced cancer must be holistic. Alongside wider health system development, it is also critical to include financing, which was the most notable and pervasive constraint for participants, often drawing on wider family and friends for financial support. In the context of LMICs, cancer can lead to an illness-impoverishment cycle, with outof-pocket spending wasted because it contributes nothing to improved health  affected by often late detection limiting treatment options and effectiveness, purchasing of lowquality or inappropriate care, and long waits to access care.

| Strengths and limitations of the study
To our knowledge, this is the first study to explore patient experiences of living with cancer prior to interaction with palliative care services in Zimbabwe. Our purposive sampling frame was achieved in the parent study, ensuring perspectives from male and female participants, alongside different ages and cancer types, using broad, open-ended questions about the experiences of participants seeking support and living with cancer. Secondary analysis was conducted across a multi-disciplinary team, including the interviewer and research coordinators from the parent study. Limitations of the study include that the parent study had a different primary aim, meaning further elaboration and theoretical sampling to address the focus of this secondary analysis was not possible. Instead, we cycled backwards and forward through the data set to identify empirical accounts that could further deepen insights into, for example, the theoretical construct of disjuncture, and retained dialogue with existing concepts and literature sources throughout the analysis of transcripts. Our analysis also included a sample of participants living with advanced cancer who had accessed palliative care providers in Zimbabwe. The perspectives presented will not reflect the full range of experiences of those living with cancer and seeking support across the country. There will be diverse and alternative experiences of people living with cancer not reflected in this manuscript, but we provide important insights into the experiences of those who navigated the existing health system and accessed existing palliative care in the country.

| CONCLUSION
The experience of a patient with cancer in Zimbabwe can be characterised by disjuncture, with unclear care pathways and an absence of mechanisms to effect continuity. This leads to delays in accessing care at each stage, from diagnosis to palliative care. Understanding the experiences of cancer patients and how they seek treatment and experience the health care system is vital in identifying opportunities for intervention development at the patient, service and policymaker levels. This qualitative study is the first of its kind to explore the navigation pathways of cancer patients in Zimbabwe, including cultural and familial factors, financial constraints, delays and uncoordinated care. This provides a basis to guide novel, contextappropriate intervention development to improve access to and provision of care for people living with cancer and their families in Zimbabwe.